What is Evidence-Based Kidney Patient Education?

At the non-profit Medical Education Institute (MEI), our mission is to help people with chronic disease learn to manage and improve their health. And, ever since the MEI was founded in 1992 by the care partner of a dialysis patient, our focus has been on chronic kidney disease (CKD). In fact, the reason that we are so passionate about home dialysis is because it is the only place in U.S. renal care where people are systematically educated to care for themselves. Home treatments are at the upper end of the self-management continuum.

The reality that many healthcare professionals and disease management companies forget is that nearly all of the lifestyle changes and tasks that are needed to feel as well as possible with CKD can only be done by the person who has the disease.

Think about it:

Who changes what s/he eats?

Who may need to limit fluid intake?

Who must take the medications?

Who should stay physically active?

Who may receive dialysis treatment or a transplant?

Answer? Not clinicans. It’s pretty easy to say that someone “must ______________” and a lot more challenging to be the one who has to complete these tasks, sometimes multiple times a day. To successfully self-manage CKD, people need to understand what they need to do as well as why they need to do it. Evidence-based education can help.

What makes kidney education materials evidence-based?

First, education materials need to address people’s emotional reaction to CKD. Facts are necessary—but not sufficient—to educate. Unfortunately, with as many as half of Americans with kidney failure estimated to “crash” or “parachute” into dialysis each year with little or no notice, we are all too often in the position of trying to help people at the worst possible time—when they are terrified. Even at early stages of CKD, people are anxious and afraid.1 And people who are afraid cannot learn.2 It is physically impossible to learn when adrenaline is surging. Before people with CKD can learn, they need hope that they can pull a good life out of what seems like a personal tsunami. The only study conducted on home in people on dialysis found that those who were more hopeful were, in fact, less depressed and anxious.3 Hope must come first, regardless of the topic.

Next, the materials need to be understood. Low levels of health literacy are a major issue in people with kidney failure, and are linked with a higher risk of death.4 Yet, most kidney patient education materials are written at reading levels that are too high for many to comprehend. One study found that most were written at above the 9th grade reading level.5 I personally analyzed each piece of the “NEPOP” (new patient education packet) sent out by CMS—using our tax dollars—to all new dialysis patients. The result? A mean reading level of grade 11.33, with pieces varying from grade 8.59 to 13.87. I’m happy to share this with anyone who is interested. At MEI, we write all patient education materials at the 5th or 6th grade level.

Effective chronic disease education materials arise out of the chronic care model. If you read my previous blog, Compliance is a Dirty Word, you can learn more about this model and why it is vital to operate out of this model when we develop materials.

Education materials need to be designed using adult learning principles. We are primarily educating adults. They may not know anything about kidney disease, but they have life experience that they can call on to help them understand. Well-designed materials use numbers, bullets, subheads, and columns to improve comprehension. They tell a story from start to finish—instead of jumping into a topic in the middle, assuming prior knowledge that may not be there. They use a font size that can be read by people whose vision may not be perfect. They always provide rationales for WHY certain actions are important.

Effective materials tap into the evidence basis for human motivation. At the end of the day, virtually all of the education we want to provide is to help someone make a challenging behavior change. For example, we all know by now that smoking is bad and exercise is good—but is that enough to make us change? In most cases, no. To quit smoking or start exercising, we need to choose to make a change, and then form and maintain a new habit. At MEI, we ground all of our kidney education materials in self-determination theory, a powerful, proven approach that helps move people along a continuum from amotivation (“whatever…”) to intrinsic motivation (“I will do this because I want to”) by supporting their feelings of competence, autonomy, and relatedness to others.

Science is a moving target: Update patient information! Effective materials need to be based on the published literature—and must be updated when important new findings emerge. I see a lot of materials that still claim all dialysis modalities are essentially the same, and the only difference is a matter of lifestyle. That was true before home HD started to make a resurgence in the U.S. in the mid-2000s after the NxStage machine came on the market. But, now we know that there is a significantly higher risk of death on the day after the 2-day no-treatment weekend on standard in-center HD,6,7 and that intensive HD, both longer and more frequent, are associated with much longer survival.8,9,10 Using older materials that are not updated does a disservice to patients.

Beyond all of this, it’s also helpful to have your target audience react to any new materials. Taking this step can help you see if there are any misunderstandings, if something needs to be better explained, etc.

Facts do matter—but they are not enough on their own to change our own behavior—or our patients’. To help people self-manage effectively, we must meet them where they are emotionally, ask “What matters to you?” and use this knowledge to help them tap into their own motivation, and provide easy-to-read, accurate information.